Accepted for/Published in: JMIR Research Protocols
Date Submitted: Dec 5, 2025
Open Peer Review Period: Dec 4, 2025 - Jan 29, 2026
Date Accepted: Jun 4, 2026
(closed for review but you can still tweet)
Public and patient involvement in research in the fields of inflammatory or autoimmune ocular diseases: A scoping review protocol
ABSTRACT
Background:
Patient and Public Involvement (PPI) is increasingly recognised for enhancing the relevance, transparency, and impact of research. In autoimmune and inflammatory ocular diseases, including Sjögren's Disease, PPI practices remain inconsistently integrated and underreported.
Objective:
This scoping review aims to identify and map existing literature on how patients and the public have been involved in research across clinical, translational, and molecular domains related to inflammatory or autoimmune ocular diseases.
Methods:
Following the Joanna Briggs Institute (JBI) guidance and the PRISMA-ScR checklist, we will conduct a scoping review across three databases (MEDLINE, Embase, CINAHL). Inclusion criteria include studies that explicitly describe PPI in clinical, translational, or preclinical research concerning autoimmune or inflammatory ocular conditions. Two teams of two independent reviewers will screen studies and extract data using a customised extraction tool. Results will be synthesised narratively and visually to describe involvement approaches, settings, impacts and gaps
Results:
As of [November 2025], database searches are being finalised. Screening and analysis will proceed subsequently. Results will be submitted for peer-reviewed publication, presented at conferences, and shared via patient networks.
Conclusions:
Findings will support researchers, clinicians, and patient communities in designing more inclusive and impactful autoimmune ocular research. This review will clarify how PPI is currently enacted in ocular autoimmune research and offer recommendations for more meaningful involvement moving forward. Clinical Trial: The protocol for this scoping review is registered with the Open Science Framework (OSF) at https://osf.io/q2k4h/
Citation
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Copyright
© The authors. All rights reserved. This is a privileged document currently under peer-review/community review (or an accepted/rejected manuscript). Authors have provided JMIR Publications with an exclusive license to publish this preprint on it's website for review and ahead-of-print citation purposes only. While the final peer-reviewed paper may be licensed under a cc-by license on publication, at this stage authors and publisher expressively prohibit redistribution of this draft paper other than for review purposes.